TFMR advice

[Misscocopops]

I am seeking some advice in regards for a TFMR.
Our babies prognosis is already very very poor due to a serious heart defect and we are awaiting cvs results which will almost certainly confirm chromosone abnormality too.
I will be 15 and a bit weeks when we receive the full cvs results, and I’ll have an additional heart scan at 16 weeks to fully see how bad our babies heart is. We are unsure if we will have the 16 week scan as what’s already been picked up mixed in with the chromosone abnormality were not sure if it’ll just be adding more pain.
I can have a medical termination in our local hospital. I’ll likely be 16 weeks, maybe 17 as we have other children we need to sort out.
I am truly dreading the thought of a medical termination.
I called BPAS today to enquire about a surgical one. Due to how far along I’ll be when it can be carried out they told me I’ll almost certainly have to go to London which is a 2.5 hour drive one way from our home.
Although I feel a surgical termination will be kinder to me, I am unsure as it will be a 5 hour round trip, plus I’ll probably have to wait an extra 2 weeks potentially making me closer to 19 weeks.
I know it’s a decision only we can make, but I’d really appreciate if anyone can offer any advice as to help me make a decision.
I have fully read and understand the differences between the two ways but we’ve accepted both ways are equally shit and barbaric really, but I guess surgical is kinder to me. I’d rather surgical but could we cope mentally after on such a long journey?

I’m so sorry to read this and hear your baby is so unwell.
I have no experience of this but just wanted so send you good wishes at this difficult time X

Hello. I'm so so sorry you're having to go through this. I was in a similar situation 6 weeks ago (I was 13w pregnant and my baby had a megacystic bladder, plus other issues, so the pregnancy was nonviable. If I hadn't terminated, baby would have struggled and then died in utero anyway. If by some miracle baby survived to term, he'd have died shortly after birth).

I wasn't really given the option of a surgical termination. I was told the doctors at my hospital don't do that and I'd have to make an appointment at a different hospital in the trust if I wanted that option. I think it would have taken longer to get that appt too. But I didn't want to wait. I felt they expected me to go the medical route. Which was fine, as that was also my initial choice.

I chose medical due to the nature of the two procedures. As you say, both are barbaric. But after research, I felt it was the right choice for me. Also, a post mortem wasn't an option with surgical, nor was the option to see baby. These were important for me too, so that swung it.

I found this website so incredibly helpful to read over both options. It doesn't just detail both procedures, it has results from research talking to women who've been through it. E.G. what women were thinking about, their concerns at the time, worries, etc. It really did help me prepare mentally.

www.healthtalk.org/peoples-experiences/pregnancy-children/ending-pregnancy-fetal-abnormality/overview

my DM and MIL told me they'd had surgical management in the past. Both around 30 years ago and both for different reasons than me. They'd been put to sleep and woke up with "it all over". I got the impression they think I should have gone that route & couldn't believe hospital doesn't do it as standard. As you said, they felt it would have been kinder on me.

Sorry this is probably not the most helpful reply. but if you have any questions I can help you with, I'm happy to answer.

Ultimately, I'm a great believer in listening to your own intuition and doing what feels right deep down. Not what somebody else is telling you to do, or worrying what is the "done thing". Xx

So sorry to read this sad news for you. I had a fatal foetal diagnosis 9 years ago at 12 weeks and made the heartbreaking choice to end the pregnancy. I ended up going to a clinic and I felt like I was in the wrong place as so many were there ending an 'unwanted' pregnancy where as I was there ending a wanted pregnancy. I had a surgical termination. Ultimately you have to do what is right for you however I often think I would have done better having a medical termination. I would have liked to have some memories of my baby eg hand and footprints and also remains to bury somewhere. Going to sleep and waking up after the procedure with nothing left to acknowledge my baby didn't help my grieving process. Hospitals are great at dealing with these circumstances in a very sensitive way. I have supported many women in similar circumstances who have had a medical termination and have really cherished their memories. That been said it may not be the right thing for you but something to think about carefully. Antenatal Results and Choices are a great charity that could help (ARC)

Really very sorry you are going through this and please just message if you want to ask anything else x

I had a TFMR last May as we found out our baby had Edwards Syndrome and various complications due to that. I had a medical termination as I felt that the best option for me but you need to do what is best for you. It is such an emotional time and it is such a personal decision. Have you been in contact with ARC, they are so helpful at talking you through the options.

MissCocoPops, I'm so terribly sorry you're in the position of having to make this decision - I remember the pain of it all too well.

In October 17 we found out at almost 16 weeks that our little girl had Triploidy, a chromosonal issue. Normally at this stage only a medical termination would be offered, but as she was measuring small at 13 weeks, they allowed me the choice of either that or surgical.

For me, surgical was the only option, despite being utterly terrified of being under general anesthetic. The whole thing was over in 20 minutes. I was up, awake and home within an hour. I felt like my normal self for the first two days and that's when the pain medication they had obviously given me while under began to wear off. I had terrible period-like pains for two days but that was manageable with painkillers. I also didn't bleed that heavily. One or two days lightly.

I chose the surgical route for a few reasons: one being i didn't know how i'd cope emotionally with what the medical entailed. I'm sure you understand what i mean. As well as that, it seemed so long and drawn out - sometimes taking days from what i'd read of other women's experiences. I was also told that sometimes the medical leaves you retaining matter and a surgical procedure is needed anyway. Not to sound heartless but, I just wanted it all over with as quickly and as safely as possible.

If you think surgical would be kinder to you both mentally and physically, wait the extra weeks and make the trip.

I'm so, so sorry you are going through this.
I had medical termination for similar reasons to you.
I'm very glad I had a medical termination rather than a surgical. I was able to hold my baby, they put them in a tiny knitted Moses basket with a tiny teddy. We got to spend as much time as we needed with them and the nurse took pictures and gave us the sd card. It helped me to process the reality of what had happened and in its own brutally tragic way it was a beautiful moment to hold them. It was the only chance I was ever going to get.
Again, I'm so sorry. Please do what's best for you. There's no good option, just the least shit.

I'm so sorry to read this and I have absolutely no advice for you. I can't imagine being in this situation and I hope you find the strength to find an answer that is right for you. I just wanted to pop on and say I follow an Instagram account from a lady who has had a TFMR and she is very open and honest about how the road is for her, she welcomes messages from mum's in a similar situation and she is doing a lot of campaigning for raising awareness around it. I'm not sure if you're ready for ready other people's stories and situations in such an open way but if you her, her Instagram name is Onemissingmum and she seems lovely 💖

Sorry I’ve not replied but I have been reading your messages as they come in and I can thank each of you enough for taking the time to write, whether it’s your experience of kind words.
We found out it’s triploidy. Some ways I’ve found this easier. Before the decision was on the babies quality of life and their survival chances. With this there’s no chance.

Taking on board what some of you have written I asked various questions and things like a post Morton won’t be needed due to the cvs. We won’t learn anything new.
I’ve also since learnt our baby if off the charts small. They had previously pushed my dates back by 2 weeks, and they won’t change it but in my mind I am. I know when I conceived. So I’m 16 weeks but the baby’s about the size of 10 weeks maybe less. I want to check on Monday but I think due to this, the chances of hand and feet print are small.
My midwife also said she would be able to fast track me locally for a surgical.
I’m 99% sure a surgical is right for me.

I understand if you don’t want to answer this, but I know my baby will not look like a baby at all. Was that not hard for you? I’ve googled triploidy Fetus and I think I’d rather picture the ultrasound picture over that??

Again thank you all so much. My partners shut down, which I get. But it’s hard. Xxx

I carry a genetic condtion and my eldest son is severely disabled. We have a 1 in 4 chance of passing on the condition in every pregnancy. I'm currently pregnant with my 4th baby. Unfortunately this time they couldn't get to my placenta at 11 weeks as planned so i had the cvs at 14 weeks. Results back at 15 weeks. I found the wait extremely difficult and knew we would terminate, if the baby had the same condtion for me I did not want to have a medical termination, i just couldn't of done that, saying that I also wouldn't want to of been pregnant for any longer once i had the results. I was very lucky and my baby doesn't have the condtion. I live in London so things are a bit different for me snd the assured me that i could have a surgical procedure soon after the results if i needed to. Is there another hospital you could be referred to rather than using bpas?

I've just written this and seen your post st the bottom. Sorry to hear this wnd thinking of you. Xx

When I saw my baby after the termination, it was very obvious that he had some serious issues. At first he was quite difficult to look at but if I just concentrated on his little face, he looked just like his big brother. I didn’t see him straight away as I wasn’t sure if I wanted to but the hospital took some photos for us and put the memory card in an envelope. A week later my husband arranged for me (and my sister, he couldn’t do it and that was fine) to visit the baby with the hospital chaplain because i’d Regretted not seeing him. There are options like this if you feel undecided.

So sorry. I had to go through a tfmr at 21 weeks on 31/12/17. Our little girl had so many problems. At this stage she was a proper baby, just had transparent skin. I feel medical termination is better for your body. It is so so hard but your body will recover quicker xx

My 13 week old had no skull and very little brain and basically stopped just above the eyes. I thought it would be hard to look at them but when I saw them I just thought, that's my baby! It was like I recognised them. It may have helped that I'd just had a dose of oramorph, which helped my anxiety dissolve away. It's so horribly unnatural, we're not supposed to see a baby at the stage so its quite a visceral thing, if you do see a baby that little something has gone catastrophically wrong after all. But I do think my baby was so wanted and so loved that I just needed to absorb every moment I could with them. But you also have to live with memories after so if you think you will be upset by seeing them (there is absolutely NO shame in that) don't add that to your grief. Be kind to yourself.

Hi there, I’m sorry you are going through this. I went through the same recently and it’s been the toughest time of my life.

Our 12 weeks van showed some markers pointing to chromosome abnormality and after blood tests I was given 1:6 chance of Edwards. Our hospital only offer medical terminations but I was sure I wanted a surgical termination. So whilst waiting for the CVS and results we got onto BPAS and started to organise this and we were given very little hope of a positive outcome.
We got our results on the Friday (Edwards) and had a surgical termination the following Wednesday. I was dreading the procedure but actually it’s ok and I was taken good care of and home early afternoon. Recovery physically was actually very quick. For me, I’m glad I stuck to my instincts as the hospital encouraged medical termination and I really did not want that.
BPAS do offer a fast track for foetal abnormalitiesso you may not have too long to wait and I know for me time really was of the essence. Thinking of you x